Kate Swaffer: Creating life with words: Inspiration, love and truth

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Co-dependence and dementia

It is normal for some relationships to deteriorate into power struggles over who is right and who is wrong, but it does not seem so okay when it is power struggles and egos of people without dementia who don’t appear to want people with dementia to stand on their own two feet. In my thinking on this, I believe it is to do with the unequal relationships that have previously been the norm, where we are dependent on others, and they have, for almost forever, been used to having all the power, and in fact, have quite likely become very dependent on it.

We were dependent on them, and they have become dependent in their role as care partner. This dance of co-dependence has been doing people with dementia harm.

Everywhere I look, there are groups of people who do not have a diagnosis of dementia and who proclaim they are devoting their lives to improve the lives of people with dementia – professionals, past and current family care partners, and others without dementia – but who, in reality, look and act more like they are fighting for fame and dollars in the business of dementia, and as if they don’t want us to succeed without them.

Many of these same people would say, publicly, they want us to succeed, they want us to be treated as equals, they are themselves wanting to work towards dementia friendly communities even, and yet, they are to doing this themselves.

Most of us have grown up in a vaguely dysfunctional families or perhaps even a dysfunctional society, and one that taught that it was shameful to be wrong, and the message that our self-worth depends on not making mistakes, and on being perfect. I am a product of that, and the perfectionism I used to exhibit was some of the baggage from that childhood.

What appears to be happening between people without dementia and those of us speaking up and living beyond dementia, is that the co-dependence many family care partners and society relied upon – and indeed, have gotten very used to – is disappearing, and our rights to autonomy and equality is being demanded.

This previous dance of co-dependence produced extremely dysfunctional relationships between those with dementia, and those without dementia, and the power struggles I see around the world now between these two groups may be because of this co-dependence we once had with our care partners.

A healthy relationship is a partnership, an alliance, not some game with winners and losers, and when the interaction in a relationship becomes a power struggle, due in part to the fact that care partners and others are given all the power over us, and people with dementia are Prescribed Disengagement®, there can be no winners.

When a co-dependent feels attacked – they are likely to react negatively. And this could be any time it seems as if someone is judging them – and it is happening a lot now as more and more people with dementia speak up publicly and say, ‘no, it is not like that for me’, or ‘please don’t call me a sufferer’, or ‘no, that is not how I feel’. But we are not judging them, we simply want some equity and autonomy.

It’s no longer just a look or a tone of voice that says we disagree, or even our ‘challenging behaviours’, we are actually speaking up, in droves, and this could easily be interpreted as meaning we are being critical, that they weren’t doing something right – rather than, us simply wanting a say in our own lives, and trying to improve the experience for all of us.

Virtually everyone agrees with the slogan, “nothing about us, without us.” Yet, so many are still not willing to allow that to happen.

A relationship needs to be a partnership, an alliance, not some game with winners and losers, or one person in control all the time. When the interaction in a relationship becomes a power struggle, or our ego gets in the way, there are no winners.

Therefore for these evolving types of relationships to work, or to meet our needs not just theirs, and for the interactions to be respectful, others have to sit back and allow us to take the reins again. Yes, caring and supporting someone with dementia may come from a place of great love, but it does need to honour and respect us.

This last couple of years, I see an example almost every day of a person or people without dementia, who are using us to raise money, to raise their professional or personal profile, and who use relationships with us to sell their own credibility, product and services. I see them using photographs of eminent people with dementia who have died, to promote their own new ventures, and whose relationship they claim are the reason they are inspired, even some who no longer had relationships with these people when they died.

Many say they want us to succeed, but act as if they are in direct competition with us, and act as if they want a group such as Dementia Alliance International to fail. So very sad…

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16 thoughts on “Co-dependence and dementia”

Totally agree with your sentiments, Kate.
I have been a care partner for Jenny, who has profound dementia and executive functioning issues for 12 years, and have got great personal satisfaction from facilitating and helping her to develop strategies which have given her as much independence as possible, and which has substantially helped her own self-esteem.
A strategy of helping individuals to do what THEY want is important – and essential. I see my care partner role as helping Jenny to take charge of her own life and independence. I also see it as important to help assess potential risks and consider mitigation required, but at the same time ensuring that the individual is involved in the mitigation steps which are put in place!
Sharing of experiences and best practice is also essential? I go out of my way to share (via presentations & Social Media) some strategies which have worked – and some which have not been successful – but this is done not for any personal financial gain but to help ‘engage’ people and encourage them to also share & come up with ideas. We are all learning, I have ‘tried out’ & incorporated some ideas that I have received (including some ideas that you were kind enough to give me when we met in London last year)

Kate, your comment says it all: “A healthy relationship is a partnership, an alliance, not some game with winners and losers, and when the interaction in a relationship becomes a power struggle, due in part to the fact that care partners and others are given all the power over us, and people with dementia are Prescribed Disengagement®, there can be no winners.”

Kate, I feel that the problem with Dementia/ Alzheimer’s itself is that in the end there are no winners, only people trying to live their lives as well as possible with a disease that even kindly can only be called insidious!

There will always be 1) people trying to help and succeeding, 2) people trying to help but ending up hurting, 3) people trying to hurt and succeeding. With Alzheimer’s Care Giving Partners, whether family or professional; we see self-serving people and altruistic people, giving people and taking people, informed helpers and uninformed helpers, quality of care people and bottom line financial budget people.

Perhaps closer study and research; using comparisons of how people diagnosed with other life threatening and life ending illnesses are treated and supported by family, friends, professionals, agencies, governments, etc; could help clarify the dementia caregiving partner model and create one which would be more equal to and more appropriate for the nature of supporting people with Dementia/ Alzheimer’s!

I believe that contributing factors to this care giving partnership thinking are more complex than the Dementia itself. In healthy, functional relationships, living life can be easier. In unhealthy, dysfunctional relationships, living life can be harder. Either way life itself can be at the same time a “fight” right beside a “dance” and the Dementia complicates it. This is true not only for love relationships but also family and health care organizations and governmental agencies. Functional vs non-functional!

Finally, with Dementia/ Alzheimer’s, eventually the person diagnosed will need to have someone make all of the decisions about meeting their wishes, care, treatment. Eventually the person with Dementia/ Alzheimer’s will not be able to make known their needs, wishes, discomforts, pains, desires, etc.

Perhaps the best way to deal with this is for the Caregiving team to try to talk about or put into writing, the details of how the Care Giving Partnership Model might look for the person needing such. Attempting to clarify how they want to be dealt with when the time comes that they are no longer able to coherently deal with life’s major as well as day to day decisions can solve a lot of decision problems for all members of the Caregiving Team. Often families and/or the people with Dementia are not emotionally able or willing to be open and honest about the disease and their wishes for the future.

Hopefully in time, with more awareness, the “RIGHT” people and “IDEAS” and “APPROACHES” will win out. I think the best bet to continue aiming in the right direction is: “NOTHING ABOUT US, WITHOUT US!”

Spot on Michael. You write of the caregiving team & I realize that I rarely read of “carers” who put real effort into building a supporting team around them and the person living with dementia.
We read a lot, Kate, about person-centred care, but little about relationships (plural).

I see in “carer support” groups on FB an unchallenged assumption that relatives have a “duty” of care & that their untrained, unpaid labour is sufficient. It’s not! People living with dementia deserve, and are entitled to, so much more.

My dear friend @HittingAlice, retired RN, gave us the best advice when we told her about V’s Dx: don’t try to do this thing alone, recruit the support you both need, build relationships with careworkers, friends & neighbours and be demanding. “Assert yourselves”.
That’s a challenge for anyone postDx!!! To get past shock & denial before the rot of co-dependency sets in…
😉

In our case V’s galloping symptoms left us both breathless & unsupported for too long (the long wait between assessed needs & adequate service provision) so we had to change how we functioned as a team. V had become passive, insecure & demanding, I did too much “for” her until my health took a dive. I admit to feeling treated like a hotel maid & resenting that like hell.
I think that’s where many “carers” remain, psychologically.

Being an advocate/supporter is something that requires a different mindset from the “prescribed disengagement ” around a dementia diagnosis which is enshrined in the health & care systems through which we’re supposed to navigate. It’s a serious responsibility that puts rights at the centre.

I’m still arguing with “carers” in our region over “capacity”& “competency” BTW😉 The medical model has done too much damage to too many lives for too long.

V & I have no time for self-pitying and no respect for pity either. We’ve both learnt.

Hi Kate
This is what I say at every meeting I go to.if the carer doesn’t want to do it then the person with dementia even if they want to do will not get to do it especially in research. Also I find they ask us for our input but then go away and do what they think is best for us. Not what we think is best for us. Fortunately I have a husband who asks me what I want and backs me up. We must all carry on the fight.

Well said Kate, I see this all time too. I see it where we have to become small, an can onl exist to profuse thank caregivers. That we be made told to understand caregivers…but they never be told to understand us. It is so grossly unhealthy…this be why I do no support the Alzheimer’s Association…or an thing they do….they do no speak for us, nor do they eve care listen to us. 😦

Why are some people so — just aarrgh? Embarrassing for a writer, but really I have no words. Yes, I do: Why do some people only feel happy if they are Top Dog in a relationship? Peer to peer is so much more helpful and gets so much more done! Still enjoying What The Hell Happened To My Brain!